I am 21 years old and a college student just trying to survive my everyday life with Chiari Malformation, Ehlers Danlos Syndrome, Intracranial Hypertension, Mast Cell Activation Disorder, POTS, Tethered Cord, Gastroparesis, and Interstitial Cystitis.

Sunday, July 1, 2012

The First of July

Belive it or not July is here. I am excited for everything that is planned for this month and I am even more excited that there is no question whether I will be able to do it or not. ;)

This coming week is post-op week three. I am still having tubing pain and I have noticed a few headaches. They are not as bad and the pain medicine makes them go away, where as before it did not help them. I HATE to even type that. The thought of the headaches worries/scares me to no end. The incisions look a lot better than what I thought they would. They are very clean and not very big.

I have lots of energy and always want to do something. That is a huge difference I have noticed. I wanted to do stuff before, but was always tired. It took all I had to do one thing a day. Now, I can do so much and not pay for it in the days later.

Looking back I honestly did not see how bad off I was, because that was my normal. I mean yeah, I knew I had headaches and excruciating pain and I missed out on so much, but that was my every day life. I did not really know any different. Now when I go to say how I use to feel, I realize that I was really bad off. For years my life was one big, huge, gigantic uncertain mess.

Great news! Take one step at a time and enjoy these good days to the fullest. If you have a bad day, try not to think of it as the return, maybe it is just a fluke. I hope so much that you only have great days from this day forward, but I think you will always be strong no matter what is thrown your way. Have a great July!!!

I am 19 years old and I have had 12 surgeries. I have Chiari Malformation, Ehlers Danlos Syndrome, Tethered Cord, Inter Cranial Hypertension, Mast cell Activation Disorder, Interstitial Cystitis, POTS, Chronic acute Mono and Cranial Vertebral Instability. I was granted a Make-A-Wish trip in December 2012. I have an amazing support system and the best docors around. Ask me any questions or give me any advice you may have.